Re: Night Parties

[Guest guest]

OMG !!!!!!

I wish I could get down south to the conf.. I HAVE got to meet this child !!!!!

Case

________________________________________________________________________________\

____

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[Guest guest]

wowwwwwwwwwwwww

>

> OMG !!!!!!

>

> I wish I could get down south to the conf.. I HAVE got to meet this child

> !!!!!

>

> Case

>

> __________________________________________________________

> Got a little couch potato?

> Check out fun summer activities for kids.

>

>

http://search.yahoo.com/search?fr=oni_on_mail&p=summer+activities+for+kids&cs=bz

>

>

[Guest guest]

-

This cracks me up!! Aubrie has different interests - not signs. But she is

equally obsessed with them. She too will wake before us in the morning and

does just fine on her own. If I tell her when to wake me, she will be there

on the dot! I can totally trust her to not get into things, not hurt

herself, etc. Cuz she's totally into rules and would never knowingly break

one.

Oh, the quirkiness keeps our lives interesting, doesn't it?

Here's one - she will fuss as if in pain for the silliest things - like

shampoo and lotion. But my mom shut her finger tip in the car door the

other day and she said nothing - just waited quietly for Grandma to notice.

Hello?? I try to tell her to only fuss when something " hurts " not just when

it " bothers " her. She doesn't have a typical pain sensation so I think she

really doesn't understand the difference between pain and sensory annoyance.

In fact, I think the sensory annoyances are a bigger problem for her than

small amounts of pain.

You've got my mind racing but none of the thoughts are coherent. I guess

I'm tired :-) Thanks for sharing that hilarious story!

Michele W

[Guest guest]

michelle r u up late reading charge mails i do tat sometimes usualy coz a

certain friend of mums comes onto my gmail and i just dont stop talking lol

or im talking on my msn and the mails will just coem lol love ya now its 4pm

hahaha

>

> -

>

> This cracks me up!! Aubrie has different interests - not signs. But she is

> equally obsessed with them. She too will wake before us in the morning and

> does just fine on her own. If I tell her when to wake me, she will be

> there

> on the dot! I can totally trust her to not get into things, not hurt

> herself, etc. Cuz she's totally into rules and would never knowingly break

> one.

>

> Oh, the quirkiness keeps our lives interesting, doesn't it?

>

> Here's one - she will fuss as if in pain for the silliest things - like

> shampoo and lotion. But my mom shut her finger tip in the car door the

> other day and she said nothing - just waited quietly for Grandma to

> notice.

> Hello?? I try to tell her to only fuss when something " hurts " not just

> when

> it " bothers " her. She doesn't have a typical pain sensation so I think she

> really doesn't understand the difference between pain and sensory

> annoyance.

> In fact, I think the sensory annoyances are a bigger problem for her than

> small amounts of pain.

>

> You've got my mind racing but none of the thoughts are coherent. I guess

> I'm tired :-) Thanks for sharing that hilarious story!

>

> Michele W

>

>

[Guest guest]

That's so cute !!!! Did it work?? Haha....

Tia

************************************** See what's free at http://www.aol.com.

[Guest guest]

Michele,

Interesting about the " silly " things bothering them.

Bang 's foot, head, arm on the wall or anywhere and she laughs,

put her hair clip in her hair and she cries and cries! - also, when her PT

measures her w/a tape measure, barely touching her and another big cry! go

figure

Cathie

************************************** See what's free at http://www.aol.com.

[Guest guest]

She's a hoot and a half some days, that's for sure Casey...and with her and

MacKenzie together, it's silliness incorporated at times.

>

> OMG !!!!!!

>

> I wish I could get down south to the conf.. I HAVE got to meet this child

> !!!!!

>

> Case

>

> __________________________________________________________

> Got a little couch potato?

> Check out fun summer activities for kids.

>

>

http://search.yahoo.com/search?fr=oni_on_mail&p=summer+activities+for+kids&cs=bz

>

>

[Guest guest]

Michele,

The pain thing does not suprise me - I would say that Kennedy gets more

annoyed and put out for longer by things that make her mad than by pain as

well. It's funny how these guys are so into 'rules'. As soon as we go into

any place new, Kennedy always wants to know who to ask if she needs help,

who is the boss, etc.

>

> -

>

> This cracks me up!! Aubrie has different interests - not signs. But she is

> equally obsessed with them. She too will wake before us in the morning and

> does just fine on her own. If I tell her when to wake me, she will be

> there

> on the dot! I can totally trust her to not get into things, not hurt

> herself, etc. Cuz she's totally into rules and would never knowingly break

> one.

>

> Oh, the quirkiness keeps our lives interesting, doesn't it?

>

> Here's one - she will fuss as if in pain for the silliest things - like

> shampoo and lotion. But my mom shut her finger tip in the car door the

> other day and she said nothing - just waited quietly for Grandma to

> notice.

> Hello?? I try to tell her to only fuss when something " hurts " not just

> when

> it " bothers " her. She doesn't have a typical pain sensation so I think she

> really doesn't understand the difference between pain and sensory

> annoyance.

> In fact, I think the sensory annoyances are a bigger problem for her than

> small amounts of pain.

>

> You've got my mind racing but none of the thoughts are coherent. I guess

> I'm tired :-) Thanks for sharing that hilarious story!

>

> Michele W

>

>

[Guest guest]

Aubrie, Amita and Kennedy!!! Amazing Kids!!! What similarities!!!

Whenever I read Michele's or 's emails I invariably say, " Gosh

Amita does that too!!! "

Amita loves to read the rules also and follow them. We were in

Disney last month and more than anything we stopped to read the

rules in RR's (how to wash hands) and anytime we go for a walk here

in the park Amita always stops to read the rules. And yes!!! When we

sit or picnic in a park or go to Mcs we find a seat facing or

near to the rules.

Deepta

>

> I know this topic has been discussed numerous times over the years

and it's

> something most of us have experienced at one time or another. I

posted the

> following on Kennedy's blog tonight, but thought some of you might

get a

> kick out of it as well:

>

> Any of you fellow parents of a child with CHARGE, and most of you

with

> children who do not have CHARGE, know what it's like to go without

sleep.

> Sometimes, Kennedy wakes up at unbelievable hours and is clapping,

singing,

> and just rarin' to go for the day; at 3 or 4 am, however, we are

not. Even

> at 6 am some mornings (weekends, e.g.), it's just not happening.

We decided

> on a new plan of attack this summer so we wouldn't be awake each

day at the

> crack of dawn: a visual.

>

> Kennedy is an excellent reader and LOVES signs, especially " rules

signs " -

> she's the only kid I know who goes to the Mc's Play Place to

read the

> rules over and over and NOT get on the play equipment. She even

likes to sit

> by them. There's just something she finds so appealing about those

signs

> with a line through them representing " no smoking " or " no shoes "

for

> example. If she isn't familiar with one, she *has* to know what it

means.

>

> Last night, she was up really late (and tonight again as well with

the

> Canada Day fireworks), so I strung some tape across the top of the

stairs

> with a note about when she could come up and get us. Tonight, when

I was

> reminding her verbally and with sign, " don't come up until 8:30 " ,

> *she*said, " I know, mama, we can put a string across the stairs

with

> the sign

> again. " Yep, she asked *ME* for a sign. What a girl!

>

> So, Graeme and I made two loops in a string and put it across the

top of the

> railing (which she can easily crawl under no problem) and put a

sign on the

> middle telling her what time she can come up and to remember to

close her

> door (that way, when she does want to get up and have a night

party, put

> DVDs on, watch TV, play video games, etc...she doesn't wake up the

whole

> house). She's very independent and doesn't get into anything, she

just needs

> reminders when she wakes up and is super excited that everyone

else doesn't

> wake up with quite the same " joie-de-vivre " as she does (to put it

mildly).

> Here's our latest " Kennedy Visual " - the

> when-can-I-go-jump-on-mommy-and-daddy sign:

>

> (you can see it at the address below)

>

http://bp0.blogger.com/_5c3ni9v_jXw/RohuIfJRhDI/AAAAAAAAAQA/bsSE2_mzV

dA/s1600-h/IMG_4269.JPG

>

> --

> Weir

>

> Personal Web Site:

> http://chargesyndrome.info

>

> The Adventures of Kennedy Blog:

> http://chargesyndrome.blogspot.com

>

> Secretary, CHARGE Syndrome Foundation Inc:

> http://www.chargesyndrome.org

>

> Email:

> lisa@...

>

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>

[Guest guest]

Ellen-

I usually check in right before bed - not a good time for making sense!

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

ellen howe

Sent: Monday, July 02, 2007 12:26 AM

To: CHARGE

Subject: Re: Night Parties

michelle r u up late reading charge mails i do tat sometimes usualy coz a

certain friend of mums comes onto my gmail and i just dont stop talking lol

or im talking on my msn and the mails will just coem lol love ya now its 4pm

hahaha

[Guest guest]

,

Bring your sign when you come down to visit, maybe it will rub off on MacKenzie.

The only difference would be that our sign would have to say " No hitting,

kicking,pinching, screaming, etc. " , you get the idea.

Jeanie

[Guest guest]

-

I can't wait to meet Kennedy and Mackenzie. I hope we have time to spend

together enough to get to know each other's kids. This is gonna be a blast.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Weir

Sent: Monday, July 02, 2007 7:15 AM

To: CHARGE

Subject: Re: Night Parties

Michele,

The pain thing does not suprise me - I would say that Kennedy gets more

annoyed and put out for longer by things that make her mad than by pain as

well. It's funny how these guys are so into 'rules'. As soon as we go into

any place new, Kennedy always wants to know who to ask if she needs help,

who is the boss, etc.

[Guest guest]

Deepta-

Too funny!!!!!!! Did they get the " rule " gene? If we can find the " rule "

gene, it may turn out to be another responsible for CHARGE :-)

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

deepta_69

Sent: Monday, July 02, 2007 8:33 AM

To: CHARGE

Subject: Re: Night Parties

Aubrie, Amita and Kennedy!!! Amazing Kids!!! What similarities!!!

Whenever I read Michele's or 's emails I invariably say, " Gosh

Amita does that too!!! "

Amita loves to read the rules also and follow them. We were in

Disney last month and more than anything we stopped to read the

rules in RR's (how to wash hands) and anytime we go for a walk here

in the park Amita always stops to read the rules. And yes!!! When we

sit or picnic in a park or go to Mcs we find a seat facing or

near to the rules.

Deepta

[Guest guest]

Michele,

MacKenzie has a complete fit getting her hair washed, combed,etc.Teeth brushing

and nails clipped are worthy of a morphine shot as well. On the other hand, she

gets stitches without freezing, has her cavities filled without freezing and a

broken nose, no problem. Let someone bump into her when she's in line and she

wants to go to the ER. AHHHH.

Jeanie

[Guest guest]

Jeanie-

That's Aubrie - just a bit milder in her reactions than Mac. It's really

amazing to me. Can't wait to see them in action together.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Jeanie

Sent: Monday, July 02, 2007 9:00 AM

To: CHARGE

Subject: Re: Night Parties

Michele,

MacKenzie has a complete fit getting her hair washed, combed,etc.Teeth

brushing and nails clipped are worthy of a morphine shot as well. On the

other hand, she gets stitches without freezing, has her cavities filled

without freezing and a broken nose, no problem. Let someone bump into her

when she's in line and she wants to go to the ER. AHHHH.

Jeanie

[Guest guest]

OH MY GOD, Michele,

My fingers are hurting just reading this story. This is a perfect of the

pain thing being different for these kids!! YIKES!! Is she ok???

ox

>

>

>

>

> -

>

> This cracks me up!! Aubrie has different interests - not signs. But she is

> equally obsessed with them. She too will wake before us in the morning and

> does just fine on her own. If I tell her when to wake me, she will be there

> on the dot! I can totally trust her to not get into things, not hurt

> herself, etc. Cuz she's totally into rules and would never knowingly break

> one.

>

> Oh, the quirkiness keeps our lives interesting, doesn't it?

>

> Here's one - she will fuss as if in pain for the silliest things - like

> shampoo and lotion. But my mom shut her finger tip in the car door the

> other day and she said nothing - just waited quietly for Grandma to notice.

> Hello?? I try to tell her to only fuss when something " hurts " not just when

> it " bothers " her. She doesn't have a typical pain sensation so I think she

> really doesn't understand the difference between pain and sensory annoyance.

> In fact, I think the sensory annoyances are a bigger problem for her than

> small amounts of pain.

>

> You've got my mind racing but none of the thoughts are coherent. I guess

> I'm tired :-) Thanks for sharing that hilarious story!

>

> Michele W

>

>

[Guest guest]

,

This is one of the funniest things I have ever seen!!!

Thanks for the laugh and the visual.

pam

>

>

>

>

> I know this topic has been discussed numerous times over the years and it's

> something most of us have experienced at one time or another. I posted the

> following on Kennedy's blog tonight, but thought some of you might get a

> kick out of it as well:

>

> Any of you fellow parents of a child with CHARGE, and most of you with

> children who do not have CHARGE, know what it's like to go without sleep.

> Sometimes, Kennedy wakes up at unbelievable hours and is clapping, singing,

> and just rarin' to go for the day; at 3 or 4 am, however, we are not. Even

> at 6 am some mornings (weekends, e.g.), it's just not happening. We decided

> on a new plan of attack this summer so we wouldn't be awake each day at the

> crack of dawn: a visual.

>

> Kennedy is an excellent reader and LOVES signs, especially " rules signs " -

> she's the only kid I know who goes to the Mc's Play Place to read the

> rules over and over and NOT get on the play equipment. She even likes to sit

> by them. There's just something she finds so appealing about those signs

> with a line through them representing " no smoking " or " no shoes " for

> example. If she isn't familiar with one, she *has* to know what it means.

>

> Last night, she was up really late (and tonight again as well with the

> Canada Day fireworks), so I strung some tape across the top of the stairs

> with a note about when she could come up and get us. Tonight, when I was

> reminding her verbally and with sign, " don't come up until 8:30 " ,

> *she*said, " I know, mama, we can put a string across the stairs with

> the sign

> again. " Yep, she asked *ME* for a sign. What a girl!

>

> So, Graeme and I made two loops in a string and put it across the top of the

> railing (which she can easily crawl under no problem) and put a sign on the

> middle telling her what time she can come up and to remember to close her

> door (that way, when she does want to get up and have a night party, put

> DVDs on, watch TV, play video games, etc...she doesn't wake up the whole

> house). She's very independent and doesn't get into anything, she just needs

> reminders when she wakes up and is super excited that everyone else doesn't

> wake up with quite the same " joie-de-vivre " as she does (to put it mildly).

> Here's our latest " Kennedy Visual " - the

> when-can-I-go-jump-on-mommy-and-daddy sign:

>

> (you can see it at the address below)

> http://bp0.blogger.com/_5c3ni9v_jXw/RohuIfJRhDI/AAAAAAAAAQA/bsSE2_mzVdA/s1600-

> h/IMG_4269.JPG

--

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Deafblind Program

Perkins School for the Blind

175 N. Beacon St.

Watertown, MA 02472

[Guest guest]

Yes, she's fine. Apparently it was just the very tip of her finger - and it

just has a little blister on it now. We're trying to figure out if a small

finger tip can be stuck without being smashed in a door. Maybe it really

didn't hurt all that much. Who knows. But, yes, she is fine. Scared my

mom half to death though!

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Pamela

Sent: Monday, July 02, 2007 9:59 AM

To: CHARGE

Subject: Re: Night Parties

OH MY GOD, Michele,

My fingers are hurting just reading this story. This is a perfect of the

pain thing being different for these kids!! YIKES!! Is she ok???

ox

[Guest guest]

Jeanie,

I worked in a group home once and when I first walked in, they had THAT

EXACT type of sign on a huge poster board in the kitchen, up over the

table. No Hitting, Swearing, Kicking, Punching, Throwing Food, etc. With

picture support.

Oy!

Lis

>

> ,

>

> Bring your sign when you come down to visit, maybe it will rub off on

> MacKenzie. The only difference would be that our sign would have to say " No

> hitting, kicking,pinching, screaming, etc. " , you get the idea.

>

> Jeanie

>

>

[Guest guest]

Kennedy also is not a fan of things in her hair...

funny the similarities...

Lis

>

> Michele,

> Interesting about the " silly " things bothering them.

> Bang 's foot, head, arm on the wall or anywhere and she laughs,

> put her hair clip in her hair and she cries and cries! - also, when her PT

>

> measures her w/a tape measure, barely touching her and another big cry! go

>

> figure

> Cathie

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

[Guest guest]

Guys do it too.. is a rules reader.. to the point that he has to read all

the

info on my medications so he knows when to bug me about taking them. He also

is weird about his hair.. Can't get him to comb it without a major battle, that

is

if he lets it grow out.. mostly he wants it buzzed so he doesn't have to deal

with

it. And gives us no hassle at all about cutting it.

Casey

________________________________________________________________________________\

____

TV dinner still cooling?

Check out " Tonight's Picks " on Yahoo! TV.

http://tv.yahoo.com/

[Guest guest]

Maybe we need to put up a similar sign at the conference outside childcare:

" Opens at 8:30. Go eat breakfast " ! I know will be one of the first,

and eager to arrive in childcare daily!

Friends in CAHRGE,

Marilyn

Mom of (14, CHARGE+, JRA)

Mom of Ken (17, Aspergers)

Wife of Rick

oganm@...

_____

,

This is one of the funniest things I have ever seen!!!

Thanks for the laugh and the visual.

pam

On 7/1/07 11:24 PM, " Weir "

com> wrote:

> So, Graeme and I made two loops in a string and put it across the top of

the

> railing (which she can easily crawl under no problem) and put a sign on

the

> middle telling her what time she can come up and to remember to close her

> door (that way, when she does want to get up and have a night party, put

> DVDs on, watch TV, play video games, etc...she doesn't wake up the whole

> house). She's very independent and doesn't get into anything, she just

needs

> reminders when she wakes up and is super excited that everyone else

doesn't

> wake up with quite the same " joie-de-vivre " as she does (to put it

mildly).

> Here's our latest " Kennedy Visual " - the

> when-can-I-go-jump-on-mommy-and-daddy sign:

>

> (you can see it at the address below)

> http://bp0.blogger.

http://bp0.blogger.com/_5c3ni9v_jXw/RohuIfJRhDI/AAAAAAAAAQA/bsSE2_mzVdA/s16

00-> com/_5c3ni9v_jXw/RohuIfJRhDI/AAAAAAAAAQA/bsSE2_mzVdA/s1600-

> h/IMG_4269.JPG

[Guest guest]

Add to that list! Any sign is fair game, but " rules " signs are a

definite draw. And, boy, does she remind you of the rules!

Friends in CHARGE,

Marilyn Ogan

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

deepta_69

Sent: Monday, July 02, 2007 9:33 AM

To: CHARGE

Subject: Re: Night Parties

Aubrie, Amita and Kennedy!!! Amazing Kids!!! What similarities!!!

Whenever I read Michele's or 's emails I invariably say, " Gosh

Amita does that too!!! "

Amita loves to read the rules also and follow them. We were in

Disney last month and more than anything we stopped to read the

rules in RR's (how to wash hands) and anytime we go for a walk here

in the park Amita always stops to read the rules. And yes!!! When we

sit or picnic in a park or go to Mcs we find a seat facing or

near to the rules.

Deepta

[Guest guest]

Ohhh that is so true with me too. I can injur myself badly and just grimice

and not say or do anything but say a tea kettle is whistling high pitch that

is waaaaaay more painful. No idea why though.

Chantelle

--

I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

[Guest guest]

Chantelle,

The types of pain are processed through different pathways in the

brain. The auditory one is very hard for the brain to block out or

ignore - it just hurts. For people who are not sensitive to noise,

they have no idea, but it HURTS and it triggers a stress response in

the body that can make someone want to hit or kick or scream or

tantrum to make it go away. If the others don't feel the pain, they

can't understand why someone gets so out of control for what they see

as so minor.

Kim

>

>

>

>

>

>

> Ohhh that is so true with me too. I can injur myself badly and just grimice

> and not say or do anything but say a tea kettle is whistling high pitch

> that

> is waaaaaay more painful. No idea why though.

>

> Chantelle

>

> --

> I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

>

>

>